Leveraging the Ecosystem...

As every other parent of a special child, we too leverage the ecosystem of our support, whichever way we can. We have encouraged our DS's grandparents, cousins and my (DD) friends to write to DS via email. Early on, we needed to sit with DS for him to go through his gmail account and prompt him to respond. The framework DW used to teach DS, was that of a train - it has an engine (greetings, how are you, etc), the carriages (body of the mail with content) and caboose (the final byes, etc etc). The train analogy was used, since DS is a vehicle lover.

Now-a-days, no one needs to sit with DS - every saturday, he logs on to his gmail account and starts responding to emails.

Now that he was on auto-pilot on this, we had asked my (DD) dad, 6-8m ago, to ask him some math questions, in a way, that it is not overwhelming to DS; but position it as something my dad learned when he was the same age and had trouble learning it. Thus, a little by little, DS had graduated to solving progression etc. Last week, he had solved, 3, 5, 8, ___, 17, 23 progression !! (Yay!!!)

So we decided, it is time to up it, a bit. So we asked my dad to ask DS another question (#2) apart from the Math Q (#1). The math question would be the routine, but the second question would be some fact-finding. The intent of asking the question is NOT for him to find the answer. But discover the process of finding the answer. To get my dad to understand, here are the samples that we provided my dad with:

Who were the presidents of USA before and after Clinton ? DS will not know - but the knowledge/resolution process could be:

• DS asks us (or)
• he asks his teacher at school (or)
• he googles
• ... 

How many 100s/centuries Sachin Tendulkar has made in his international cricket career ? DS wont know this; again, his options would be:

• he can ask me (or)
• he can google (or)
• he will figure out just like cars sites (that he loves to go and visit), there are cricket sites too...

So, the intent is, to make him discover the process of learning by himself (functional) rather than finding the answer (skill/knowledge). The belief is, if the process is set, the learning would be a resultant.

The first installment of questions have come through to his mailbox. We'll know how DS handles it soon !

Motivation...

We are seeing some motivation with DS for the past few days, including the time in India during our vacation.

Once he is back from school, post his customary break,  he has been on-task - he and his DM do functional math (currency, percentages etc) and then simulate it by acting a shopping scene. He also has shown a great amount of interest in doing an online reading program ("raz-reading") that his class-teacher has suggested. He seemed to be looking forward to it and ensure that he does that at least once a day. He is also showing quite a bit interest in reading a story books - like a mini-novel - called "The Ravens Mystery Series". So much so, that DW has placed order for a set of such books !! He is also on task for the physical exercise with his Master; and ensures that he voluntarily asks me to join him for 15min of exercise on days when Master doesn't come home for the training...

So, not sure, if he is becoming a bit more aware and self-regulated of what he he needs to do, but this is a welcome change for us. The place where he seems to have shown some regression is ability to be in the group at Teach Social. He seems a bit restless and indulges some minor inappropriate actions - like laughter...

I wonder if it is to do with the change in diet !

Making of a cheese cake...

We are in the process of going through a 4d off, as a part of Thanksgiving holiday.

We had decided that we would make a cheese-cake on one of those days. The process to make was to go find a recipe (from book, net or ipad), get the ingredients by going to the store and then come home and make it.

I've this habit of picking up some odd books during garage sales - one such book was a big recipe book that details all kinds of cakes and dessert. So, it was the turn of DS to go through the book to find one. His DM gave him a start page to look at - he looked through it and zeroed on one of the recipe - my suspicion being he just pattern matched 'cheese cake' with one the first title he saw ! :-) But he is not supposed to get off that easy, right ? So I took him to index and told him to look for recipes under cheesecake, and page #s. He found several and kind of understood the difference between contents and index page of a book - we think so. Next is to look for recipes in iPad with the all-recipes and epicurious app. Found several again - the key learning here was the reviews - he understood the number of stars made a difference... In any case, we finally, rejected all the recipes and went back to a simple one from the recipe book.

Next step, go to the store and get all the ingredients. Shopping list - check ! But, both DW and I were pretty much clueless about where to find the ingredients - most of them. For example, the recipe list said 'softened cheese' - so how is it different from other cheese. Implies that we need to ask around at the store with the employees there - as we did this, we gave running commentary that we didn't know and hence we are asking around. Finally got all the ingredients and it was now time to make it.

I've probably stated this earlier in these chronicles. DS, although, doesn't like the sound of blender, has adjusted well with it at school during their cooking classes. But at home, he still has that - so typically, we work that when he is at the bath or out taking out the garbage. Yesterday, it was cold and I didn't want him to go out simply. So I told him the option of staying in a room behind closed doors; he didn't like it, got angry and said, he'd actually operate the blender himself ! He did so (and a day later, he believes that sometimes good things can come out of anger :-)). It was pretty good experience then on - he wanted to operate the egg-beater, to mix the egg, cheese, sour-cream etc... He was completely involved in the whole exercise, helping out, doing (or more than) his part, cleaning up, switching pots and pans etc...

Here is the photo of the end product...

Later on during the night, we went to the movie Real Steel across the street. He enjoyed the movie - also he broke a "rule" for that. He doesn't like to go to a movie after dinner, because it would imply a late-night movie, which he doesn't want to go to. Yesterday, we had dinner and then went to the movie - he really enjoyed it... the only question he asks these days is this - how long is the movie - he has had the Avatar experience - not a 3-hr boring movie ! :-) How true !!! I wouldn't want to subject my greatest enemy to that experience (in fact, not to any of James Cameron experience ! :-))

Type of Questions...

DS doesn't like to be asked questions. I believe it stems from the fact that he doesn't like to be tested, because he could be wrong. The same reason he is a not a big Math-liker. Because Math has only rights and wrongs and he doesn't like to be wrong...

...similarly questions are the same for him.

A few days ago, I had asked him a question as to why he likes Indian cars more than US cars. That put him in a spin. He started talking through his thinking and was not really clear why I had asked him that question. Did I mean that he should not like Indian cars ? Did I mean that he should know more about US cars ?

We actually discussed through that like part of it - what could be the reason; he had spent more parts of his life in India ? There were new cars every year in India and he could incrementally learn ? Always the first like is a lasting like ? etc etc...

But to us, it gave us a model... There are three types of questions:

1. Learning Questions - the questions people ask him, when they do not know something. Like when he is asked directions
2. Thought Questions - the questions people ask him, when they want to get his opinion or his reasoning - things that make him think about the topic or himself. There are no right and wrong, but its very subjective
3. Test Questions - the questions people ask him, when they want to know what he knows.

of course, the #3 is the one he hates. But, this is the first onslaught :-) He now is aware that these three types exist. The awareness if the first step of internalization... Lets see where it goes.

Non-Expression is not same as non-emotion !

We had an incident that happened two days ago closer to home. Summary: A guy who got stressed out at work, got a gun, shot around 10 people at his work place (3 fatalities), and then drove his get-a-way car, abandoned it ~4miles from the incident spot, got into the parking lot of our (DD) company, shot a woman wounding her in attempt to car-jack that failed. He was at large for about 24hrs after which he was found and shot dead.

The thing about this was, the suspect's work-place is about 1.5mi west of our home, and my work-place (where the attempted car-jack happened) is about 4mi south-east of our home and DS's school is about 2mi south. When the incident happened and the police were trying to find him, we were all stuck in limbo...

- DS was in the school-bus that got stuck in traffic near school and turned around. We (DW and I) weren't sure how to bring him back, since I had taken the car to work. But, fortunately, the bus itself dropped DS in an hour

- I could not get out of work, since there was a lock-down, since our company wanted us not to get out until the suspect was caught or the perimeter was safe enough to get to the car.

- 5hrs later, we were all evacuated since the police wanted to search our premises if the suspect was able to get in.

so, all in all a stressful day for all of us.

DS was quite worried about the safety of me, car when I was at work, and then as a family when we were all home. He was watching to the TV news to see if the suspect was getting caught.

I was quite concerned about DS's reaction and the stress. I had sent a note to his school asking if they'd have some counselling facilities and how they'd manage student's stress. I had talked to his class teacher about it. He had said that at school, they will talk about it as a class and see if any further counselling is required.

This is what I got from the class teacher today.

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Just wanted to let you know that DS did fine today. He was a bit wound up but we expected it. We did have a class discussion about yesterday and he shared with his class how scared he was about being close to the first situation and then your being at He told us that he cried when he heard you call on the phone as were alright. He thought it was special time for the two of you being together last night as well. I think you know, he loves you deeply!

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Was so touched and overwhelmed ! Yet another proof that debunks the fallacy. Definitely, the inability is around expression; not love.

2011: DS' Summer of Content & Contentment !

This summer has been one of the most satisfying ones for us. Something clicked, and it is as if everything was in sync and in rhythm... not just routine, but rhythm.

(To me

Routine = a set of activities done in a similar order, where as

Rhythm = a set of activities done in a similar order, but with great mental engagement and mind-share; where there is an emotional investment).

Here is what we did with DS during this summer:

1. We worked on the comprehension. We have a guide who comes home for 2hrs/week and works on stories with him. Try to structure his imagination to a cogent set of thoughts. Some of the key words we have used are: "What is the central idea" ? "Central theme" ? "What is peripheral ?" etc.
2. We worked on "structured Chaos" - Take an unknown situation, like assembling railway-model and then "try" it. The key-words we used were: "Lets try", "Lets make a guess, even if it is wrong", "lets take 3 guesses"
3. Focus on the "effort" and not "result". I believe this has resonated with DS. Basically, in any thing, we want him to try; and we rated him on his "effort" in the scale of 1 to 10; and not made a big deal of result. So, when he does something, we used to say, "your effort today was "10", and the result was "7", but when you did the same thing a week ago, your effort was "10", but result was only "3". The intent being, if he puts in an honest effort, the results would improve. I think he has understood this.
4. We focused on physical activity (with a physical trainer - Master Jay - see the link here - the write-up on the last para); Master Jay comes home and trains with DS twice a week - not just physical exercise that helps him in his posture, but also inter-hemispheric integration and proprioceptive awareness. We believe it has helped DS stay with a conversation, make him more perseverant and be present to the situation. Needless to say, when I work with him on rest of the days, I always have used the 'effort' and 'result' grading !
5. We worked on his independence - ability to plan his time, calendar and finish per calendar. This is in rudimentary stage :-).

We will continue to work on the above 5... We feel very good about his progress and how DS has let us to work with him, this summer. He has started seeing with increasing regularity, within himself, the ability to be self-aware and self-regulate more and more. There are fewer non-negotiables for him these days...

Self Regulation in distress situation...

Major breakthrough yesterday. Usually, we talk about self-regulation for DS while he is acting silly; Yesterday was the incident about self-regulation in distress. This is the first step towards problem-solving in distress conditions...

Here is the incident:

He has this favourite you-tube video. It is called - "Fiat vanishing from Bombay'. This is a video about phasing out Fiat cars out of Bombay that someone has posted in you-tube. I believe he likes this because, he doesn't like the Fiat car; and it was something that is deep in his psyche. The first time he went to Bombay (aged around 2) to meet our sisters family, they had brought their Fiat to pick us up from the airport and the noise of the car perhaps scared him a lot.

The poster/owner of the youtube video, had removed the clipping yesterday. The usual DS would go ahead and cry and melt-down leading to tangential statements like not wanting the computer yesterday. However, yesterday, once he found that out, he went to the room on his own to "handle" it. DW and I were still unaware of all these, since we were watching TV. Appears after about 10 min he came and told his DM that his favourite video is gone, but he will go calm himself and come back. We could see he was struggling to keep calm and keep his tears off. Then he went away for another 5min and came back much calmer...

He is still disappointed, but we believe he handled it extremely well and is handling it well now. He has thought about alternate way to save some of his favourite videos.

I hope he is able to generalize this experience and apply to others too... Although its a 'proud moment' for us, we (particularly I) need to realize its a still grieving moment for him. And not talk to him about how proud are we, as to how he handled the lost of the video... because any such talk probably reminds him more of the loss ! DM has intuitively understood this and kept away from him and taken the pressure of usual routine off today.

Our belief is that his physical exercises (the training we started with a private trainer) along with DM's internalization of Pace's approach is helping the inflection.

How to extend the motivation ?

DS, we believe, is quite bright and understand things well. In our opinion, his two main areas, where he lacks are these: (1) Motivation and lack of it (2) Communication effectively what he understands.

We would love to find some "magic" on the motivation part. When he likes something, he goes all the way - not just with the cars (surprise !), but also his learning comes through clearly, in areas when he wants to apply. For example, he doesn't like math very much - my view is that, that is because, in math one is either right or wrong; and he doesn't like being wrong. So learning math is always stressful for him; he wants to check-mark it and finish whatever is in front of him in the paper. Thats the background.

His mother has instituted a process with him, where he earns money and spends money. The way he earns money is by doing things faster than the assigned time. So, if he has 20 minutes to do something, he finishes it in 15, he is 5m early - this will earn twice that - so he earns 10c. He uses this money to spend on what he likes - watching movies, taking breaks, chicken etc.

Few days ago, he was short on cash; he owed his mother some 18c, by end of the day. So, before he went to bed, he declared that he would do one of his chores in 14minutes (which has the allocated time of 20min) and will get the another chore done in 7 minutes (assigned time of 10min). That does take care of the 20c he owed. I was really surprised that he worked this out mentally - the equation I saw was 18 = (12 = [20-14] x 2) + (6 = [10 - 7] x 2)... This has mental addition, multiplication and subtraction...

So where does this motivation come from ? How do we leverage this ? Ideas ?

Anti biotics

DS was ill few weeks ago - and he was on anti-biotics. As he recovered from his illness (flu), we found him extremely engaged and high self-regulatory behaviour - for example, getting dressed quickly (with no dreaming), finishing his homework quickly with full mental engagement etc etc.

We went back and checked our notes (thanks to DW, who diligently keeps diary of each and every day of his food habits, his behaviour etc for the past several years), and we found similar impact/benefit earlier too.

Talked to the doctor here and he said he has heard similar stories from other parents.

Of course, during illness he is also on a very strict GFCFSF (sugar-free) diet, since he just eats Rice-dosa and rasam-rice... (but because of his dehydration, we did give him salt+sugar water).

Wonder if there is a connection between AB and being in the moment !

The Change

DS just had a flu and came out of it - He seem to have come out of the chrysalis phase suddenly ! Wonder if this is due to the Antibiotics, but more on that later..

I (DD) had called home from work. Usually DS doesn't pickup the phone at home. This time he picked up the phone and addressed me: "Hi Red" - this is the way he usually calls me. I was very surprised to hear DS speak. I asked him if DW had asked him to talk. DS replied, that he picked the phone on his own, since his mom wasn't available. Then I ask him, but you had said "Hi Red", what if it was somebody else. DS said, "I saw you name in the phone."... And to us, this was cool - this guy not only picked the phone that he usually doesn't like, but was quite engaged in the process and regulated his response accordingly ! Cool...

Another incident: usually he goes to Gym in the morning with his mom. Few days ago, he was holding the door for DW and her friend to come out. The friend of surprised at the chivalry - his response: I was holding the door for both of you like a gentleman. Additionally, he also remembered and thanked our friend for a very good chicken curry when he met her at the gym - the curry, the friend had shared the day before. He told her that the food was very good !

To crown this all (can there be anything more ?), DS is very scared of the vacuum cleaner noise, such that we use it at home when he is not around. At DS's school, they were trying to make the kids learn to use vacuum, but DS was so scared of it. However, in a class discussion, he had set a goal for himself that he'd use the vacuum and will overcome the fear of vacuum cleaner noise. Two days after that resolution, he spilled cheese by mistake. When the teacher asked" how are we going to clean", expecting DS to say, "I will pickup". To the teacher's surprise, DS said, "I will use the vacuum to clean" and went ahead to do so. His teacher was blown away...he immediately called home to let us know. Now DS feels very proud about overcoming his fear!!!

DS seemed very focused the past two weeks. A few days ago, I tried to teach him frisbee, by breaking down into micro-steps; last weekend, when we went to a picnic with his cousin, he very diligently tried throwing the frisbee and did so successfully !

We are crossing our fingers and toes. DS seems to have gone to the next level of self-awareness and self-regulation. He understands what could offend and is building concentric circles of social behaviour - what is acceptable within home isn't acceptable with his cousins; and what is with them will not be acceptable outside of them.

Will keep you all posted.

Transition Pains... ... and gains...

Have not posted for a long time. There were quite a few things happening at work and at home. Has been a year of tough transitions all across. It has been frustrating and uninspiring; not much motivation to blog... not only on this blog but on the other one too.

Regarding DS, he has moved on from the middle school (where he had really settled and doing well) into high school. In US, going to high school implies, one physically shifts school. For both, DW and I, this was one of trepidation. As expected, DS had enormous challenges in settling in the school. We started with resource classes and special day classes. He seemed to have hard time coping with difficulty quotient that he had become disruptive in the class; and we had complaints frequently. So we had to pull him off these resource class (and replace it with work at home - more of that later). Also, the school resource specialist have worked with the class teacher for certain techniques. Since the past couple of months, DS seems to have settled down very well at school and he now says he loves the school and the teachers in his class* (* see note at the end of this post).

Re his development, physically he has grown very tall - taller than 5'10" (and just hit 14) and stronger, helps me carry grocery bags from the car, including 20-25 pound rice bags. He continues to go to Karate & Tennis class. Over the summer, he has learned to swim the breadth of the pool without keeping his foot down and breathing between strokes. He now goes to once a week swim class, where the teacher says he is quite a natural in his back-stroke. As the soccer season got over, the basket ball started. He wants and is very excited to go to the basket-ball practices.

On the emotional intelligence side: he has become quite flexible - the techniques we learned at Pace Place has helped in getting him to break most of his inflexible rules - so much so that his mother can drive a car (but he would not sit with her - knowing how she drives, even I dont :-) ). He has learned to be in the grey area - or the understanding of it. He has begun rating his experience from 0 to 10 - so its always not black or white as it was before. It was a moment of revelation for us, when he rated two bad experience in negative. And articulated that -3 was worser than -1. He has pretty much on his own on the computer these days - surfing to check for cars, researching about maruti and see helicopter crashes... Sometime, I do wish he surfs the normal ;-) sites that teenagers of his age do !!

Socially, he is more in the group. During our annual winter pilgrimage to India, he was sitting with the group whenever we visited our friends. He also attempted and succeeded quite well in asking return questions to keep the conversation going. The biggest change we saw this time, he didn't try to remove himself from the group setting, but continued to sit with all of us.

On the learning side: His comprehension is improving; we are looking using Linda-Mood Bell of visualizing for reading comprehension. Somehow we believe the time has come where he is ready for higher level of comprehension, that may aid his learning. DW is reading a book on that (link here). We have also effectively used the captive-attention time, via long drives: we typically take a long drive through the suburbs in the sparse weekend traffic, during which we have a very fruitful and productive engagement. Stories (that he makes up) have become an effective way for him to communicate his thoughts and experiences. We believe, through the stories, he is not only getting the intellectual understanding, but also internalizing the message.

In the mindmap model I had posted earlier (link here), I believe, DS has made progress in the flexibility, problem solving, perspective taking, understanding the gray areas and some level of independence. He is also begun to accept failures, which implies he is no longer worried about being wrong and hence not attempting. Simply, DW instituted a simple approach - during the long drives, she will ask a question and DS has to attempt 5 answers including 4 wrong answers. Being ok with wrong, we believe, will in turn reduce some of his anxiety.

So, here we go ! 2011 will be the year of 20++ :-) That is how I want to look at this after the 2010...
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* After all the tribulations of settling down in the high school, DS was one of the 3 students awarded for making the greatest progress since joining ! P....r....o....u.....d !! Of the effort he has made to get here.

Reading and Comprehension

A friend of ours had asked DW re some of what she does with DS on Reading comprehension and if she had tips on those.

Here's her response.

• It is better to start with reading comprehension with simple stories which are direct, doesn't involve tricks, actions/reactions of a character based on their feelings. (Theory of mind skills...intentions/perspectives etc)
• Make use small strips of paper where both (DM/DS) draws the characters, places/objects. sometimes when they find drawing to be difficult they just write the words. As DM reads, DS moves around these papers. for eg..a bird flies up in the sky and sat on branch of the tree... he takes the bird makes flying action....make it go up till the sky, make it sit on the branch of the tree..This kind of worked for DS.
• If the kid is good in drawing, then the parent can read the sentences the kid can draw ..starting with 2-3 sentences per day. These kids have difficulty to make pictures in their mind or imagine as they are reading. This is a concept from Lindamood Bell where they have methods/strategies to make movies in the head as they are reading.
• Comprehension is better when DS reads some passage where he could relate/understand the experience. since he could connect with his own experience. He could understand a book about visit to supermarket than a book about aliens in space.
• DW first tells the story for him to understand and then read the story.
• DS/DW act out the stories and read it again. The character names in the story would be DS's favourite movie characters (Ashok etc from Agni Natchithiram)
  
• Other strategies which we use subconsciously: DW has to explicitly work with him: When they come across a new word..finding the meaning...how it relates or connects to something he already knows or experienced......Some abstract terms, idioms and phrase needs to be worked on separately

Hope this helps...

Keep on Rockin' the free world !

Yesterday DS and I were watching a Tamil movie - "Sachin" - a தயிர் சாதம் uncle movie, that DS likes. In the end of the movie, the heroine professes her love for the hero. Watching that, I asked DS what would he do, if he a girl comes and tells him that she loves him.

DS face lit up and all smiles (with lot of shyness etc) and said that he will feel proud about it. And "I will also love her" :) Then for some reason, he said that a girl in his school tells "hi" to him. I wonder if he likes her. He is the one, who usually doesn't talk about girls and runs away if he bring up the subject. He was all lit-up when he talked about the girl. But he didn't know her name, but she knew his. I told him maybe the next time she says Hi he could introduce himself and ask her for her name and be her friend.

Btw, I also told him that particular girl just might be very friendly - just to make sure that he doesn't take it any other way. She would say hi to a few of his class friends too; and its common for girls and boys to be friends with each other (and gave a lot of examples). My point was to tell him that not every girl who says Hi, are the ones you fall in love with !! :-) Although, I believe for a 9-year old (which is where i think he is emotionally), its perfectly normal to believe so !!! So we had this talk for a while and I was glad he shared that with me instantly in that conversation. It was funny to me (and insightful) that he related the girl saying "hi" to him when I asked him the first question... Probably, its his first crush !

In any case, it brought back some of my own mind-set to the fore. When he first diagnosed, I had this Neil Young's (Rockin' the free world) that seemed apt for DS:

"...
There's one more kid
that will never go to school
Never get to fall in love,
never get to be cool"

Now, with the journey we have come with him (a great deal of credit goes to his DM), maybe, he would just be another average and yet another kid who goes to school, will fall in love and gets to be cool !

Which comes first - Right brain or left brain ?

This has been something on my mind since our last week at Pace Place. The power of right brain (Revolution, inspiration etc etc) versus the left brain (evolution, perspiration etc etc)...

It is quite known that kids in the spectrum have quite a bit of "rules" that governs their day to day life - that kind of shows up as inflexibility and lack of willingness to change and adherence to the sameness. Although DS has made great progress around flexibility over last year; however, there are some few places where he is still inflexible and would not want to change. That stems from a certain of set of rules that he has in his mind. So, we always think these kids are highly logical and analytical and are primarily left brained !

However, there was always an hole in this theory... Because we have seen DS to be highly perceptive; and we have seen that our emotional highs/lows do impact some of DS' thinking and his own moods. Particularly, that of his, DM's. And stepping back, we have found that most of his rules comes from situational incidents that happened at that time.

This was around in our thinking and more so, since we came back from Pace Place. And today morning, something happened that kind of made the light bulb go on for me. DS was typing an email to his grand-parents; and DW was behind him, guiding him. When DS made an error, instead of moving the cursor back to where the error was, he started hitting the back-space, that started erasing all that he had typed. DW who was behind him, seeing him hit back-space, reacted (as is wont with any one), with a bit in higher decibel, that he'd lose all that he had typed. DS who heard it (but wasn't seeing his mom), reacted to the voice (probably, a bit startled at the decibel) with an impromptu "rule" - said he'd start afresh and erased all that he had typed, even beyond the error... Post-that, DW did try and get to the mode in describing the mistake as "small-mistake" (vs medium vs large)... But by that time, DS had "rule" in place...

This actually made me think. In the incident above, it looks like an emotional response has led to the logical action. The first emotion (from his mom) was something he wasn't able to handle; His emotional regulation got him to the comfort zone; that was to have a "logical rule" to that emotion; discard/disown and put a distance between himself and the actions/surroundings that had led to that emotion. And there, birth of the rule.

So, is the spectrum primarily right brained (or inability to handle emotions stemming from right brain) or left brained ? [rhetorical question, btw :-) ]

So from our own perspective, it is clear that we need to do couple of things:

• Meet the eye when talking to the DS; and touch is very important for that emotional equilibrium.
• Get the positive emotion first, before explaining the logic behind

The other key observation for me was this - the crucial conversations had to happen with him, face to face, with some kind of touch involved. Any conversation with him, sitting side-ways or across rooms aren't going to help and becomes counter-productive. Thinking about it, this is where the RDI principle of "referencing' could really help...

Easier said than done !! :-)

At a Fast Pace !

Based on a friend's recommendation and talking to another parent who had been through this, we decided to go for the Immersion experience at the PACE Place. [Leave a comment to this blog post with your email id if you need more information on it].

It was a great experience. DW feels very happy about the experience and its as if all the pieces of puzzles are falling in place for her. I'm (DD) more intrigued and I'm in between Storming and Norming phase of Forming-Storming-Norming-Performing phase. I have intellectually understood the concept and have internalized some of them. Its now to get back and do it and make it part of our lives. In any case, our experience has been great and of course, very tiring on all of us. We took some of the challenges with DS head-on (those non-negotiable inflexibility he had). He seems to have come through it. Now the key part of it, is to take that experience and encode it in a way, it becomes repeatable for him. I believe we have some tools for it.

Here is the my list of 13 ! (a bit disparate, but its my list !! :-) )

1. Appeal to the emotional/feeling side before you go the thinking/logical side.
I kind of equated Feeling/thinking ~= Revolutionary/Evolutionary.
Revolutionary changes are quantum leap, where as evolutionary are incremental.
A strong Emotion always trumps thinking.
Do this in the envelope of Bigger-Stronger-Wiser-Kinder

2. Touch, Touch, Touch,
Use Touch to convey emotions/feelings. Silently.
Engage touch while talking.
Disengage touch to communicate disapproval.

3. Anger, Bossy, Irritation (on the DS) countered by higher +ve emotion - push envelope to seek help
(DS base emotion -> safety, fear; ask him to ask questions)

4. Have purposeful motion.
Create obstacles and going around them and create need for purposeful motion (vs Ruminating Emotion)

5. Be conscious of Frequency - Duration - Intensity of any reaction

6. The quantum thing - about preparation and post-summary - Small, Medium, Large (Silliness, anxiety, worry, fun) - The transition between pre and post is the experience. Encode it

7 Use -10 to 0 to +10 to grade silliness, anxiety, worry, fun etc. Do prediction before the event and assess after the event. The difference is again the experience. Through this, look to build anticipation. Anticipation will trump anxiety, which will trump DS's own rules

8. "ASK ME"

9. When throwing a tantrum - "Go to your room" - No anger on our faces - done w/smile (BWSK), as we (DD/DM) continue talking. If 'go to your room' needs to be backed up by a physical push, DD should do it.
Safety is the key" ; can push the envelope up to that point, unless feel safety is threatened
"Ask me 'am i calm'" ?
Hold on to higher positive emotion. Its ok to add edge to the voice.

10. Map the -10 to 0 to +10 scale to Threat (Danger) to Reward (Interest) scale. The key again is the experience. The Fun and the anxiety lines in the graph cross over somewhere during the experience

11. Hand on shoulder or start stop speech to get attention. Eyes follow where the hand goes

12. Baby Brain (makes rules, worries, ruminates, avoids, reacts by being bossy or whiny) Vs Big Kid Brain ( Regulates, organizes, makes sense, deals with the moment)

13. Connector Rx

Here we go - that is my 13 encodes. Now, onward we go !!!

ps: I believe that Eric, Kathi and Steve are perfect complement of each other - this is where the whole was much greater than the sum of the parts...

Progress...

Trying to restart the chronicles again...

There has been significant progress with the DS. He has also grown a lot - believe he is in the cusp of puberty and we have all our fingers and toes crossed as to what would happen when it hits him ! He is very tall for his age - about 5.9" and quite slender - result of which no pants or shirt fit him !!! For that height, he is expected to be a little more plumper than what he is now. So we go to a shop asking for a 28x32 (waist x length), the girl at the shop goes, Hmmmm... (and I take a glance at DS as to see if he stealing surreptitious glance at the girl) !

DS is going to Tennis and Karate classes. The great thing about these two classes are the teachers have broken them up into simple parts and have been teaching him. So DS, feels highly competent and at the same time in that zone of edge-of-competency, that allows him to make progress. He is very keen to attend karate tournaments and showcase (parts of the) Katha ! One goal for summer, this year is to focus on his physical development a bit - because of height (and possibly weak hara, as we call in Karate), he is hunched... Should work on his middle-body strength this summber.

In any case, we are continuing to do RDI, although not officially - due to work and otherwise, we have taken a 6 month break from it. We are continuing on the Teach Social classes (Erstwhile Michelle Garcia Winner's Social thinking) - that is once a week with another boy. That has been helpful in teaching techniques. He is getting some "organization" (but left brained) concept behind it. One interesting development has been 'story-telling' (linked). DW and I have been using story telling for imagining the future for him and he has been using it to convey his difficulties and experience. While we use Rahul as the central character, he uses two - Anil and Balan. He has been very effectively conveying his experiences in school, through those proxies - his punishment (of teasing and getting to stand outside the class etc etc :) ). We are keeping to that agenda and over-joyed...

Some other snippets

1. The class teacher tells us he is very social these days. When he gets to the class, before the bell, instead of sitting in the class, he gets his friends out of the class and hangs outside
2. He is quite bright in the class and comprehends the concepts - once he understands the concepts its easier for him - but is also quite playful and continues to push the boundaries
3. One night, as I was sitting in the couch, he came and hovered around me a bit, and then said "Dad, I want to talk to you". And asked me about my day and how my office was... My two weeks of stress flew away.
4. He is beginning to understand relationships are compromises. He is talking about the compromises I've (DD) made and his mother have made. Its like talking about it makes him internalize it a bit more. Now, we can see he is adjusting a lot for our changes. And we have swooped in and taken advantage and make a lot of flexibility changes.
5. There are still a few core things that he is non-negotiable on (which is why we decided to go to the PACE Place (link here) for their immersion program. Drop us a note, if you want to know more.

I hope we'd be a bit more consistent in posting from now on. And most importantly, the trajectory of the development graph for DS is consistently upward !!

For the newcomers...

I do not really feel like welcoming you to the blog, since discovering that you have a child with special needs is not something very easy to start with. The intent of this post is to make it a bit easier on you...

You would find a tremendous amount of resources, help and support in many forums on the net (some of the resources on the net are listed on the side). For us, this has been (and still is) a journey, for the past ~10 years... Based on our experience here are a few things you may want to look at first:

1. This is a journey, its never one and done - there is no magic cure. Its very much like looking for a best possible life for a Neuro-typical child. There is work that needs to be put in both cases; its just a bit different for our children.
2. For special children, the intervention is (my strong belief) "parent driven, specialist aided" (specialist also encompasses teachers at school). Read as much as possible yourself; ask questions, never be "shy" to propose what you need from school, your aid, intervention specialists etc. Take your time to read without stress.
   
3. Share your situation with your family and friends. Once people are aware, the amount of help or how much they'd do is tremendous. What we learned is, if we don't share, then our friends suspect something is different, but are polite enough not to pry or offer help (so that they don't offend you)
4. There is ENOUGH TIME. Do not rush. It just needs adjustment of your outlook -eventually, be it a normal child or special child, the parents want the child to live independently after them. So, you do not need to rush - there is enough time for the child to develop. Maybe your child would not pass 12th at 17, but would do it at 23 - so what? (and possibly, for independent living, passing 12th may not be required!!)
5. Set out clear goals for yourself and the child - the goals could be split into micro-goals over a period of 3m. Take it one at a time - remember you have enough time ! :-)
6. Start your financial planning - plan as if you'd have to support your children beyond you. Look for some annuity based income that starts later in the life for yourself and the child. Plan as if you have to support his/her life span too.
   
7. As a family, spend time together - although its easy to say this, this has been one of the areas that has been tough for us too, given that we all have our own needs, distractions and interests.
8. Finally, stay very very positive. One thing about our kids are that they are very perceptive. It always appears that they sense negativity and it affects them. Once you are positive, you will see doors open and pathways appear. Expect the lows from your kids, and enjoy the highs ! Expecting the lows helps you to stay positive.

I didn't talk much about intervention, since there are so many of them out there; all of them aren't great for all - you just need to research and see which (or a combination of what) would work for your child. We have listed some of what we do on the links on the side... and some of our own thoughts and actions in the blog.

I also would advise the parents to figure out a technique for themselves to be able to sort out the information flood coming at them and organize it in a way that they can implement it with their child, stay plugged in, watch the result and modify/drop as appropriate. There are several complexity methods to it - you could google cynefin framework, DSRP framework etc for that.

Good luck and all the very best...

Absence...

Hello all !! Its been a long time since I posted anything (infact, anywhere). Things have not been really hectic - i.e., it has not been that hectic that I could not find time to post... I think its a lack of inspiration :-), or mental fatigue, if you will...

Lots have been happening, mainly due to DW's efforts - DS has been growing (literally, he is as tall as me now and he is only 13) and has been enjoying life a lot. There has been great improvement in several areas (of note: flexibility, which is one of the core deficit). Story-telling has been a great success: DW uses it to message across; DS uses it to convey his thinking and why he did/does certain things through characters in his story. I will post something in detail soon.

Our focus for next year (beyond flexibility) - is "anxiety reduction".

Will post more about it.

In the meantime - Wish you all a great 2010 - Have a wonderful, peaceful and successful year ahead.

Summer of '09

We talked about the Summer of '69, jokingly... This summer has been really good for all of us, including the DS.

Here are some updates on how the summer went... What I've written down is very specific, but there are several abstract that we cannot put our finger on and explain it descriptively...

1. DS has gotten (or is getting) comfortable with numbers and word problems. He is now playing monopoly, getting a roll of quarters from Whole foods checking (counting by stack of 4s), playing a card game (counting by stacking in 10s) - we have begun using the Whole Movement template for that (the fractals and whole concept) and touch wood, it seems to have worked well.

2. He is getting motivated to get rewards for his efforts; black tape for learning in karate class, star in tennis class, ice cream on Fridays post week-in-review, if his weekly schedule is complete, surprise reward is the plan is followed in Teach Social. The funny thing is this - His karate classmate was on leave one week. DS was happy that he could get the black tape while the other boy misses out (since they started the same and the other boy had overtaken DS due to similar reasons)... The key thing about Karate class is this: DS has realized that there are hundreds of things to learn in karate (and extended it to Tennis). We are now hoping that he realizes that about other things in life and is no longer that anxious about new things.

3. DS has started playing games that he doesn't like with his friends (pretend and otherwise). He has started coming up with different ideas to play with few objects like cars, bean bags.

4. He has definitely shown signs of reading non verbal clues, in non-RDI-lab environment. Reading facial expression, he had asked, "why are you scared" ? The other day, while he was searching for something, he self-talk with his DM, let me see where your eyes are looking and follwo the path of her vision.

5. He is more aware of others and their needs. DW had made ragi aaloo rotis. He likes them... As he was eating and finishing those, he asked DW, "Is this for appa too ?" and then left two of them for me. He has started helping his DM with cutting vegetables; and agreed to watch an English movie at the theater (Ice-Age 3), with us.

6. He has shown higher order of thinking and problem solving and coming with alternate ideas - he had a lot of different size of boxes to junk... He came up with by stacking them one inside the other to make sure it was at manageable size to carry... Another time, when the door of the bedroom came off, he had safely taken the screws and kept them aside, calling parents for help.

7. Improved story reading comprehension. DW is using drawn pictures of the character and places, one of us read the story, other moves around the papers like puppet show. He has shown full engagement, not shutting off which used to happen when reading...

Has been a good summer... The DS is also growing up physically - he is taller than his mom and is almost as tall as me - just about two inches shorter than me.

Just keeping our fingers crossed and hands together for the trajectory to continue !

Awakenings !

Some nice anecdotes that happened in the past two weeks:

• DW and I were tired on one weekend afternoon and crashed out - sometimes during weekends we take an afternoon nap as a family - get together talk for a while and then doze off. That particular day, it appears DS didn't feel like sleeping, so perhaps knowing that he could disturb us, he left the room... The funny thing was he came in after about 1.5hrs and woke both of us up, saying, "Appa, amma wake up - its 4.15PM - its already evening...".
• DS sleeps in a separate room during nights - however, he still finds it hard to sleep through the night alone. So he comes into our room around 2-3AM and crashes in with us. Its likely he would also use the bath room at that time. However, he isn't very quiet with the door and most times it is very loud - as the door is shut, the automatic bolt makes lot of noise as it slots in. So, one day I showed him how to close it, so that the noise can be minimized - ie turn the handle down and carefully release the bolt gently. Next day, at night, when he came into sleep, he actually followed it ! It was an indicator to us that he is "in the moment" most of the time !! He is also getting aware and stays very conscious about it... I told him then that I'm very proud of him that he remembered and cared for others...he responded by snuggling up close ! :)
• Tonight, he and I went out for a walk. We were playing a scenario - where he played the role of himself and I played multiple roles - myself, DW, his friends, my mother and a stranger. During the role-play, my conversation was to get him to disclose his gmail password; he didn't reveal it; but once he slipped up and then we thought and talked through that. Then I was stranger asking him to reveal the password and making (sexual) advances (the one thing we are told that we need to be safe in this country)... He didn't budge from his stand. All this was good; and then came the icing on the cake - after the role-play, he commented that people could say anything and try to trick him !! and he needed to careful !! Cool !!! I like his recognition of the possibility of trickery !!!

Btw, we do find role-play and socio-dramatic play is helping him internalize a few things. He also loves acting scenes... particularly assigning his own life experiences to movie characters' names.